Sarita / nephrologist info from lupus site

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Veteran Member

Date Joined Jan 2005
Total Posts : 659
   Posted 1/12/2008 1:14 AM (GMT -6)   
Hi Sarita,
I responded to you in the lupus forum but thought I would give you more info here. My first visit to my nephrologist was due to massive fluid retention, protein in urine and small amounts of blood. He did blood work and a 24 hour urine. A week later he scheduled a biopsy. The results came back as membranous nephropathy and "these findings along with a positive ANA raise the question of lupus nephritis." My neph strongly believed it was lupus but couldn't prove it, I thought he was nuts. However, during the course of the next few years I started having more and more symptoms. It got to the point that I thought I was losing my mind. I had all these strange symptoms that would suddenly appear and then disappear. I also had severe memory problems. I was sent to a rheumatologist who ran every test imaginable so he could rule out anything else that might mimic lupus. Everything came back normal and he immediately said between my biopsy, symptoms, and positive ANA I definitely met the criteria for lupus. My neph agreed and another neph told me that just the positive ANA along with immune complex nephrotic syndrome is a red flare signaling lupus. All my labs for lupus have always been normal except the ANA. It started out at 320 and is now 1280. I have also had severe diarrhea off and on and other than mild inflammation no cause was found. It is apparently my lupus attacking my digestive tract. It comes for several years and disappears for several years, although it just started up again. My blood pressure also runs about the same as yours. I do not mean to imply you have lupus, but you obviously have something going on. I can certainly sympathize and I have to admit hearing my diagnosis was a relief because I thought I was losing my mind and becoming a hypochondriac.
I wish you all the luckin the world and please keep us updated.
Sandy         ( from the lupus forum)
DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
meds: plaquenil, amiloride, klor-con

Veteran Member

Date Joined Mar 2005
Total Posts : 2486
   Posted 1/13/2008 12:39 AM (GMT -6)   
Very interesting story, curlyhair! Thank you for sharing...sounds like you've been through a lot. I'm sorry your guts haven't been doing so well now. What does your rheumy said about your diarrhea? Do you get any help for that?

The uncertainty is the worst. I feel like I'm living in a constant state of apprehension - what's coming next? I try to blow it off so I can focus on studying, but it's been very difficult. Honestly, I'm not sure how I'm doing it other than being in total denial at times.

Thanks again for the info, all of you guys over there have been so helpful!
Co-moderator - IBS Forum

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